I’ve recently been diagnosed with graves, am not on any treatment at the moment after having iodine treatment before Xmas. Does anyone suffer from joint pain? My hands and feet ache a lot. And I feel like my legs are really heavy , I am struggling to get regular blood test done because of the COVID, my last blood test was about 6 weeks ago and they were ok, but the my consultant said my thyroid could be heading under active.
I thought everything would go back to normal once my thyroid was back to under control, but I feel far from it.
Thank you marie
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Mhymer
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I’ve just quickly looked back at my blood test, and the last time any of them were checked was April 2018 , I will mention it at the doctors the next time I can get an appointment 🤷♀️
Always always obtain all your results - so you can monitor your own health and check what has been missed. Did you know which tests were carried out to diagnose Graves ? Were they done by a GP or an Endo ?
You can have tests done privately through Thyroid UK - Medichecks is popular.
Sorry I don’t know which test were carried out for the Graves’ disease because they were taken in an hospital appointment, so they don’t show up on my GP records that I can see , am sure they could ,it’s just not on the screen so I can view. Most of the time I just see a nurse to have my bloods taken,
Results are legally yours. Try to get them for your records if you can. Your results below scream Hypo - even without the ranges. What did you think about private testing ? Low B12 xan cause brain fog ...
Most cases are straightforward, but not all and you should not have been led to believe everything would go back to normal. It is highly likely your thyroid levels will continue to drop until you are under active, or are already. High probability of becoming hypothyroid it is stated in the leaflets from BTF frequently given out by hospitals. (I’ll include a link). Were you given this or something similar? Many are well again once the correct level of Levothyroxine is stabilised, but some struggle with the monitoring to get to that stage and you may read many other worrying stories.
Never trust being told by medics you are in the “normal range” where in the range can be extremely relevant & sadly GPs do not always complete a full thyroid evaluation. Do you have / or can get a copy of your past results, you can request a print out. You need your results with ranges. TSH, FT4 and FT3. Also important to test vitamin D, folate, ferritin and B12. Ideally thyroid antibodies (although this is usually only done by specialist). Presumably your antibodies were tested at least once to confirm your Graves?
You also need current test as joint pain is hypo sign. Ensure the FT3 & FT4 is reviewed not just TSH. If you have had hyperthyroidism for 10 years it’s possible the mechanism which regulates the process has been disrupted, or will take many months to correct itself.
How were you treated for hyperthyroidism previously? And have you had eye checks or any eye issues?
My TSH level in may was 2.74. T3 3.9 and T4 12.3 , these test are all be taken at my GP, my consultant tested for the graves , I had a really bad time when my T4 was 54.4 , I still had to wait 6 months to see the consultant, I was on betablockers, and I was put on 60mg of carbimazole , when I spoke to my consultant back in may (on the phone) I mentioned that my eyes are stinging and water all the time for no reason, I thought I she said she would refer me to see someone, but I don’t think she has because my bloods were within range.
I’ve also noticed how bad my brain fog is , is this normal?
We need the ranges to accurately interpret and they vary between labs but I would say with a TSH above 1 it is high and FT4&3 are Very low, or narrowly with in range.
60mg carbimazole was a very high dose. Are you still taking beta blockers? some like propranolol affect T4 to T3 conversion. Brain fog is another hypo symptom.
Please chase up about your referral to ophthalmology. Stinging, watery eyes may be a sign of thyroid eye disease, although it has many other causes too. Generally RAI treatment is not advisable when is it active as it’s known to worsen the condition.
I think you need to start being proactive about your treatment. Get a diary, note your symptoms - compare against your blood test results. Make notes of questions and discussions you have with doctors and follow up on referrals and appointments. Even though you are not well and this should be done for you unfortunately you will have to become your own advocate.
No I’ve stopped taken the betablockers, they were propranolol, and they helped a lot,.... thank you for your feedback, I will be getting in touch with my GP tomorrow, .... and you are right am gonna have to more proactive, I really appreciate all the information I am getting. 👏
The symptoms you describe sound like hypothyroidism and would suggest you arrange a full thyroid panel to include TSH, T3, T4, antibodies and ferritin, folate, B12 and vitamin D.
RAI is a slow burn and we all end up hypothyroid overtime, though I seem to remember being put on Levothyroxine very soon after my RAI treatment for Graves, way back in 2005.
It is known that RAI can trash vitamins and minerals so it's important you get these checked out as thyroid hormone replacement, Levothyroxine, works best when your core strength is strong and solid and this will mean maintaining optimal levels within the ranges, and not just being in the range somewhere.
It is the same principle as when taking Levothyroxine and it's all about where you feel at your best within the ranges that the NHS work to. Just being in a range somewhere doesn't mean you don't need an increase in medication, and most of us feel well when our T4 - Levothyroxine is in the upper quadrant of its range with our T3 also being balanced in the upper quadrant of its range. with the ratio between T3 and T4 being around 1 / 3.5 - 4.5 with most people preferring to be nearer the 1 / 4 or under ratio than any further out.
The Elaine Moore Graves Disease Foundation website is an excellent adjunct to this amazing website and Elaine had RAI way back in the 1990's and finding no help with her continued symptoms initially wrote a book to help others who maybe in a similar position. Being a medical researcher she has become something of an authority on this poorly understood and badly treated auto immune disease and now runs her website and helps Graves patients world wide and offers holistic, alternative options not necessarily following the mainstream medical profession.
I am with Graves and post RAI I now manage lingering Graves, thyroid eye disease and hypothyroidism. I now self medicate as the NHS routinely prescribe just Levothyroxine and I have found, that to be well, I need full spectrum thyroid hormone replacement, and the NHS has not supported me.
Hi am Graves person with RAI so my thyroid is mostly dead. I am Hypo most of the time. The thing you mentioned about eyes; I have TED. I have not found anything to help with eye pain and bulging when they act up. Did you find something? It's been about 10 years plus since it all went wrong. My eyes are no where near as bad. Then I was on prednisone for over 9months. The pred helped with overall pain issues everywhere but not my eyes. Overtime (years) my eyes started to get better so swelling went down, eyes went back in socket instead of bulging out. The pain I get every morning and light sensitivity just wont go away. Did anyone figure out how to fix that?
In short - no - I just have to get on with it as best as I can.
Like today, because of the sunlight I can't go out and have my blackout blinds totally down, and uncomfortable in my body but especially my eyes.
Sorry, maybe someone else knows something to help you - just make sure if you are using any eye drops, lotions or potions that they are preservative free products.
Thank you for the quick reply, and I will have a look at the website you recommended, I am learning so much more about how this can affect you, I felt like it was all in my head, I’ve noticed that GP are not really interested in it
I've just read that your eyes are upsetting you, and yes, I have experienced this.
Depending where you are in the country there are TED - thyroid eye disease clinics or possibly Moorfield Eye Hospital outposts, or if in London I'd just ' rock up ' at Moorfields in City Road.
Don't waste time, your eyes are important, even a regular optician can help.
There are many brands of eye drops, lotions and potions to ease sore dry eyes, you'll maybe need to try a few, but always select the preservative free options.
Go back to your doctor and explain how you are feeling and ask for the complete blood tests as previously detailed and post back on here the results and ranges.
It's not in your head. In the beginning it is probably worse than it will be once they get some parts of it under control. Fight for yourself. You need them to KNOW how you feel. I hope you find a good Endo doc to get this adjusted for you.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Before I had my thyroidectomy, I also suffered from body aches and joint pains that I believe were due to Grave's. I just felt so...heavy? and weak, almost like whenever I lay down to sleep, my body felt like it was sinking into the bed. I continued to feel that way even while taking Carbimazole/ having "normal" bloods, so I wouldn't be surprised if it is the Grave's making you feel this way. Hope you start to feel better soon x
That’s really interesting to know that, because it’s hard to describe to my husband how am feeling, I expected my bloods to show them being off the scale because of the way I was feeling, but when they came back and were in range, I felt like, is this all in my head.
Ohhhh dont be thinking its all in your head...it isnt... my Endo had me almost believing it myself....had RAI 16mths ago for hyper/Graves and after 8 weeks became Hypo...dont know which is worse!!you need to be your own Endo.only you know how you feel...but vitamins seem to be my saviour...still have symptoms...aches..brain fog.eyes watering and dry eyes..have tried everything .changing levo brands/dosage...T3 and syrup levo...nothing works at all!!@bloods all come back perfect readings!!!but I still feel bad..Endo has delisted me for even daring to try T3!!..says he is perplexed so says he cant help any.more.!!!.in other words you are on your own..think he did me a favour actually as he was a bit dim witted and was sure that my syptoms were in my head think he was.more diabetes /narrow thinker. Did not have ability to think outside the box..he once told me I was upset at what had happened to me thats all!!! Believe in yourself and your GP and its onward with the battle to get well...trust yourself and how you feel and try everything...vits first...vit A..vit D3..B12.Iron..and eat and sleep properly...and gallons of water...not loads of coffee either...see how you go...good luck...
Having been ' overactive ' for some 10 years your body 's metabolism has been swinging between phases of ' hyperactivity ' followed by phases of enforced ' under activity ' through taking the AT drugs that blocked your own thyroid production.
Imagine keep revving up a car - and then braking - I would imagine over a long period of time the engine and mechanical parts would feel and bit of wear and tear.
Those past 10 years must have been a bit like being on a roller coaster and will have taken its toll on your body, and your overall health may take time to recover, and understand why you made this final decision to remove/disable your thyroid thereby hoping the symptoms of hyperactivity would be a thing of the past, and they may well be, given time and adequate thyroid hormone replacement.
The choices aren't great either, are they, have your thyroid surgically removed with a thyroidectomy or take what appears a quick easy fix by ingesting Radioactive Iodine which is presumed to go directly to the thyroid and burns the thyroid out within your neck.
Either way you end up without a fully functioning thyroid and need thyroid hormone replacement as your symptoms of hypothyroidism increase and become debilitating.
There's no quick fix with thyroid treatment - initially you will be put on Levothyroxine and you should be monitored on your T3 and T4 blood tests every 6-8 weeks and dose adjusted as already detailed.
It is imperative that you are not monitored on just a TSH blood test result and this may become a problem in primary care, as generally a TSH seems to be the only test doctors can undertake.
You might fair better if under the care of the NHS endocrinologist as they are more able to action the appropriate blood tests.
Many of us on this forum now arrange our own blood tests privately and if all else fails you too can do this and there are full details on the Thyroid uk website.
Graves is an auto immune disease. it's in your blood, your DNA and there is probably some genetic history, maybe a generation away from you and somebody, somewhere in your extended family with a thyroid AI disease health issue.
Graves is said to be stress and anxiety driven and read it can be triggered by a sudden shock to the system. I've was able to identify my trigger and have learnt of my situation, back to front, as my RAI was in 2005 and I only started reading up on here, and through Elaine Moore's book, when I became very unwell some 5/6 years ago.
When the thyroid comes under attack, it is because it is such a major gland that the symptoms experienced necessitate getting professional, medical help.
The NHS do not know how to stop your immune system attacking your body but suggest if they remove the target of the attack, it solves the problem.
True the thyroid overactivity has been rectified as now you haven't a fully functioning thyroid, and will be reliant on thyroid hormone replacement otherwise you will fall into hypothyroidism which is just as debilitating in it's own way.
Have you seen Elaine Moore's site? She has a lot of information on there and helped me get diagnosed when my GP thought I was suffering from the menopause for over 2 years.
Hi there, I can only comment on my particular situation and recognise we are all different. I was diagnosed last year with hashimoto has a result of a number of tests. The reason for going to the GP in the first place was that I had severe muscle and bone pains predomininantly in my legs, knees and feet (a little). I was struggling to walk without pain. Pain was 24x7 Shoulders ached alot too. I was tested also for Vitamin D which was severely below the required level so I was put on a a course of tabs. My levels increased and gradually I got back to the point of not having constant pain. It may well be that the levothyroxine I was taking also was impacting too. So I would make sure you have your vitamin D tested. Good luck
Yet again, i'm astonished that Graves patient's get such a lack of information and careful follow-up. I've got autoimmune Hypo , not Graves, but until i started reading this forum i assumed that Graves patient's were looked after more carefully than i was, if they had had treatment which removes or destroys the thyroid gland .
But i keep reading stories where they disable/remove the thyroid and then send people on their way as if they just took out the Appendix, without warning that becoming Hypo is inevitable without the thyroid.
What do they think the thyroid is doing when it's healthy? how do they think a body is going to work without thyroid hormones ?
When we are hyper, Graves’ patients are usually under specialist care and have regular appointments and tests. When our condition is considered to have been stabilised (whether via remission, long-term medication, RAI or TT), we are usually discharged back to GP care. This seems to be the stage where many people have difficulties.
I wasn’t seen regularly, my T4. Was 54.5 at it’s worst, and I still couldn’t see them any sooner, every appointment I’ve had, has been a six month wait
Not good . I had to wait three months for my initial appointment, but since then they’ve varied between 4-12 weeks depending on my thyroid tests, and sometimes when it’s been three months I’ve had a couple of blood tests in between. Obviously a postcode lottery.
I agree with you, I have had hardly any information if any , I am pleased that I found this website, I only see a nurse for blood test, and I am only seeing the consultant every six and because of the COVID it’s just a telephone consultation, which feels rushed, even though I told how bad I was feeling, am still not seeing her tIL December now 🤷♀️
Glad you have found your way here early on in the game . it took me 17 yrs.
I hope you will not feel so alone with it in future.
It's really hard for people who don't experience it going wrong to understand how many things the thyroid affects, even when they live with you.
But there's no excuse for the lack of information, which makes us feel like it's just us having problems , and perpetuates the idea in others that it's a simple little problem that's easily solved.
No it's not you 🙄. You see the endo and its " well your blood levels are normal you can cut back on medication " me: well I have all these random symptoms. Oh they're nothing to do with graves 🙄. Hmm your antibodies are still a bit too high for my liking, maybe you should think about RAI or thyroidectomy. Me: I would rather stay on medication. Well we will test again in 3 months and see you in 6 months and see how the antibodies are then. Me: if you remove/burn my thyroid I will still have the antibodies. Ahh yes but you will probably be hypo which is easier to control. Really 🙄🙄😤😡 it is really difficult for graves patients to get a proper assessment of blood always go by TSH and not a lot else. I come away from the appointment thinking why do I bother. I allow 2 hours for travel and parking and then it seems you are no further forward 🙄😂
I agree with you, I went because my shoulders hurt and one doctor said yeah it’s because you have Graves and that was it 🤷♀️... but I hadn’t even had a proper test to confirm I had it , it was just because I had overactive thyroid
I had one assistant endo who when I said I wouldn’t even consider RAI should I relapse because I didn’t want to become hypo, actually tell me that I wouldn’t become hypo!
She said, ‘It’s only a little pill’ and held her thumb and first finger up as if she was holding a little pill.
It was nothing to do with the size of the pill and everything to do with the fact I knew that I would probably end up with no thyroid, hypo and possibly inadequate treatment from then on.
Exactly 🙄they really don't get it 😡. They also seem to think that isolating and separate bathroom, food, cutlery etc is not a problem and the fact that my husband isn't well is not a problem either. Maybe they think hypo iseasier to treat I've really no idea anymore.
Hi Marie, I too suffer from graves and I am on block and replace at the moment. Before treatment all my joints ached and I felt I had no strength in them. I ached so badly it hurt to turn over in bed at night and I felt about 90.I feel a lot better now not as much aching and getting strenght back.Hoping for block and replace to work.Hope this helps
I had a dx of Graves and was treated with RAI 131 in 1993. That, a bad car accident the same day and over radiation led to PMR, which was missed and confused with fibromyalgia and orthopedic issues from the car accident. Please understand that Radioactive Iodine treatment leads to hypo thyroid and supplementation with T4 and often T3 is necessary. Undiagnosed PMR can cause fibromyalgia. There is a difference between being in "normal range" for TSH, T3 and T4 and being in optimal range. Learn as much as you can and best of luck as you start this journey.
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How naive of me to think they'd treat Graves like a proper Disease ....
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